ROSEMOUNT, Minnesota — Meghan Edberg is the mom everyone wants in their corner.
When she found out her son William had a rare disease called Angelman Syndrome, she quit her job to start working for a foundation that does research and raises awareness about the disease.
"I said, 'What can we do to help? How can we get involved?'" Edberg said.
Edberg and her family gave themselves a three-year timeline to raise a half-million dollars. They just accomplished that goal shortly before International Angelman Syndrome Awareness Day.
"We never in a million years imagined this would be our life," Edberg said.
Edberg noticed her son's motor skills started to regress around nine months. They began tests at the hospital and were left with questions for months. Finally, a scan revealed William was having seizure activity. Genetic testing led doctors to the diagnosis of Angelman Syndrome in January 2020.
Symptoms of the disease include:
- Motor-function delays
- Seizure activity
- Lack of sleep
- Struggles learning how to speak
- Regression in learning
Research shows people with Angelman Syndrome can live full lives but oftentimes, not independently due to speech impairments and cognitive delays. Edberg says her son is the light of their world and she believes everything happens for a reason.
"He has the best humor, and he is so empathetic," Edberg said. "We can't ask for anything more than that to have a happy child at the end of the day."
For information on how to donate to Angelman Syndrome research, visit this link.
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